In honor of November being National Adoption Awareness Month, Portrait of an Adoption is hosting the third annual acclaimed series, 30 Adoption Portraits in 30 Days. Designed to give a voice to the many different perspectives of adoption, this series will feature guest posts by people with widely varying experiences.
So, Do You Want To Adopt Her?
By Meadow Rue Merrill
When Ruth arrived, she was sixteen-months-old and couldn’t lift her head, couldn’t roll, couldn’t uncurl her fingers to grasp a toy. Born in Uganda and abandoned at birth, she’d lived in an orphanage before being diagnosed with cerebral palsy. A grassroots medical organization then brought her to Maine for six months of physical therapy.
My husband, Dana, and I met Ruth through friends who had volunteered to host her. We were already the parents of two boys, ages seven and four, and a daughter just two weeks older than Ruth. Although we’d often talked of adopting, Dana thought we should wait until our own children were older.
All that changed when we met Ruth. It was the summer of 2004. We’d joined our friends, Allen and Theresa, at their Brunswick church for the final night of vacation Bible school when Allen placed Ruth in Dana’s arms.
One glance at her dark gleaming eyes and mischievous smile, and Dana was a goner.
“So, do you want to adopt her?” he asked me. I thought he was crazy.
Although Dana and I had often talked of adopting, we’d never considered adopting a child with special needs. Not ever. What if Ruth never walked? Or talked?
With therapy, some children with cerebral palsy—or CP as it is commonly called—are able to live independently. Others require care for their entire lives. Cerebral palsy is often caused by oxygen deprivation at birth. The resulting damage destroys the brain’s ability to communicate with the muscles.
In addition, Ruth had oddly shaped baby teeth, with indented dark ripples near her gums. Like much about Ruth, the cause was a mystery. However, the more time we spent with Ruth, the less such differences mattered. Our kids were some of Ruth’s biggest advocates, always eager to bring her toys, unbend her tiny fingers to help her hold a rattle, or make her laugh. How could we let her go?
That fall, when Theresa was diagnosed with cancer, we became Ruth’s new host family. As the expiration of her visa drew near, we explored what it would take to adopt Ruth. We had the child, now had to find a legal way to keep her.
Over the following months, we extended Ruth’s visa, held fundraisers, hired two lawyers (one in Maine, one in Uganda), and began our home study. We also discovered that in addition to having cerebral palsy, Ruth was profoundly deaf. The combination was devastating. How would Ruth communicate if she couldn’t use her hands to sign?
An even bigger concern was one pediatric neurologist’s prediction that Ruth was also likely profoundly retarded.
“It won’t matter whether you adopt Ruth or leave her in Uganda,” he said. “She won’t know the difference.”
Wouldn’t know the difference? After nine months with our family, Ruth cried when she saw me reach for my jacket without also reaching for hers. She squealed with delight when Dana tucked her under his arm to chase our other kids in a game of tag. Plus, there was something about Ruth’s smile, something about the way she laughed that convinced us the neurologist was wrong.
With the help of Ruth’s orphanage, Welcome Home Africa, we went ahead with her adoption. In July 2005, I took Ruth back to Uganda and went to court to become her permanent legal guardian. I then carried her on a ten hour bus ride to Nairobi to finalize her new American visa. After three weeks in Africa, I received the final paper needed to bring Ruth home just six hours before our plane left. On Valentine’s Day 2006, we celebrated Ruth’s adoption in the little courthouse just down the street from our house.
Over the following years, Ruth and the rest of our family rapidly learned sign language. Although Ruth couldn’t talk or sign, she responded to the shape of our hands by glancing at pictures on an eye-gaze board. At four, she underwent surgery for a cochlear implant and began learning spoken English. Within months, she was spontaneously sticking out her tongue for “yes.” For “no” she gave us a blank look that meant “try again.”
Despite relying on a wheelchair and needing full physical assistance, Ruth quickly showed us how smart she was. By age seven, she had learned so much spoken English that she no longer qualified for a deaf education. In the fall of 2012 Ruth began first grade at our local public school and could spell all the names of the kids in her class by the end of the first month.
We still didn’t know the cause of Ruth’s disabilities, but while her body remained bound, her mind was clearly free. In February 2011, Ruth was excited to bring home her personal communication device—the computer that would allow her to speak with words she picked out on a screen.
Tragically, the week she was to bring it home, we discovered that Ruth had died in her sleep. Without warning our beautiful, smart, happy seven-year-old daughter was gone.
“Sometimes with CP, these things just happen,” the emergency room doctor said after the ambulance brought her to the local hospital.
But I was completely devastated. I was Ruth’s mother. She depended on me. And I’d failed to save her.
Overwhelmed by grief and shock, I phoned Ruth’s new neurologist. He mentioned a word that in all the years of bringing Ruth to doctors from East Africa to Boston I’d never before heard: kernicterus.
Caused by a build up of bilirubun, the neurotoxin that causes newborn jaundice, kernicterus causes the type of cerebral palsy that Ruth had while typically leaving the higher-thinking regions of the brain intact. It also commonly causes hearing loss and—most shockingly—damages the enamel on baby teeth.
Thanks to modern medical care, kernicterus is rare in the developing world. However, experts estimate one-hundred new cases occur in America each year. The exact numbers aren’t known because no one is currently counting. In places like Uganda, where bilirubin levels aren’t likely to be checked, the numbers are much higher. Jaundice is also more difficult to detect in black babies because the telltale yellow doesn’t show up in their skin. And it is most common in premature babies, like Ruth.
Only one other patient treated by Ruth’s neurologist had been diagnosed with the condition. Like Ruth, this girl had also died unexpectedly in her sleep. Even more devastating was learning that kernicterus is 100-percent preventable with a one-dollar blood test and proper treatment, which includes exposing a baby to light or giving her a blood transfusion.
Ruth never had to suffer the way she did. My hope is that because of her life, more people will learn about the dangers of kernicterus. For more information, go to www.pickonline.org.
Meadow Rue Merrill is a New England journalist and aspiring author for children and adults. She writes from her home in Mid-coast Maine and is completing a memoir “Redeeming Ruth” about the life and loss of her daughter to raise money for children with special needs in Uganda. She blogs at www.meadowrue.com and is working to publish a book. Follow her journey at https://www.facebook.com/
Family photo below by Zimowski
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